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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-08-2010, 09:44 PM | #191 | ||
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thanks kathy.
Having my neuro stand behind me and openly discuss anything with me, any issues, including the depression, and having his staff, on my side with the insurance company, has made a huge difference for me also. |
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09-11-2010, 08:13 PM | #192 | ||
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my hobby, and Im only a few years in, Im still an amateur, but my son is cheap and likes my work so it works out great for him.
He needs to finish his dining room, new window treatment, floors, but this is the buffet/server, table and chairs I made him. ONly brought 2 chairs over so far,(made him 6) the wifes car wont carry more than 2 at a time, just finished the chairs. The table is alot bigger than it looks, its over 6 feet long and its solid white oak, weighs in over 300 lbs. some days the muscles say stop, so I stop. but I love my woodworking. Last edited by allen L; 09-11-2010 at 08:44 PM. |
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12-18-2010, 11:52 PM | #193 | ||
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kind of strange today. I had my first day of treatment, I delayed the treatment a week to see if I could go longer than the 6 week period.
I cant describe the way I felt for the past 10 days. Lethargic? Unmotivated? headaches at night mostly stemming from my eye area, not sure if its sinuses, even popped a drop of mestinon, but fell asleep. Im usually up and busy, but Ive been feeling down the past week or so. Nurse says my body knows when its due, IM not sure I believe that. AFter the treatment today, I had horrible congestion in my chest. Was a bit nervous, couldnt seem to take a deep breath without choking and coughing. About an hour later after getting up and moving around I felt better. Strange. I just cant blame everything on MG or the ivig. Still feeling overall ok, I retired recently so I can live alot more stress free. I hope everyone here is feeling a bit better. my neuro imformed me next visit he is putting me on cellcept, says I shouldnt expect any relief from it for close to a year, says that what the new findings are for myathenia. But Im willing to give it atry to get off the IVIG every 6 weeks. to all here, merry xmas, happy new year,and to those I missed, hope you had a great chanukah. |
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12-29-2010, 12:29 AM | #194 | ||
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the thing I notice most is my personality traits changing.
has to be ivig, cant figure out what else would be doing it. I used to love bloodie movies, slasher movies, zombies , now I cant tolerate the sight of blood. I get squeemish. very strange. and sad movies, I just want to cry like my wife cries at all sad movies. I used to make fun of the tearjerkers , now they torture me. |
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12-29-2010, 09:47 AM | #195 | ||
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Allen, just a little note as I am not fully up on your storry as my eyes make reading harder these days. For me personality changes happen when my vit D gets too low which can elevate parathyroid. hyperparathyroidism includes mood changes. It sure makes ME alot more me when my vit D is in the 40s or higher. I know D levels get checked alot more these days but my doc is not one that takes this seriously so I have to ask for my tests between Endo visits.
Annie59 Quote:
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12-30-2010, 09:00 PM | #196 | ||
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Im going to bring up this issue with my reg doc since IM getting a full workup Jan 10th, and when I see my neuro.
I start Cellcept in March. My neuro says theres been great results but I need to be patient, it doesnt happen right away. I remain 104% positive, and write things off as not possibly mg, just old age, but after approx 2 years , I notice things that upset me. Unusual muscle weakness in my arms. After driving in tons of traffic for hours and gripping the steering wheel, whether its mg or not, my left arm was so weak when I got out of the car it was a chore to use my computer and check emails and things. Almost as if my arm wanted to nap, I just never experienced this before and have difficulty describing it. Is it MG, I dont know, and I dont want to think Im getting worse, especially only 10 days after my ivig. Other things like sometimes when Im on my feet, my legs act as if they refuse to listen to my brain. They just get sluggish, like Im walking in snow and each step requires more work but I dont feel tired or like I did too much to warrant the feeling. I hate to relate anything to mg. I dont want to think Im getting worse. My wife claims she notices the difference in me constantly. Like when Im sluggish and just dont move well, and when Im up and vibrant, and she asks me how I feel, I say great. Because of these different types of sluggish feelings,(again, maybe not really sluggish, more like a mutiny of my muscles in certain areas), Im asking my physician about vitamins I might be lacking or whatever. My neuro jots it down, talks into his machine, and hasnt said much lately except he feels I need to be on cellcept.(he says other stuff, maybe Im not paying attention, Im just mad at him because he told me I have this crud disease and Im determined I can beat anything) |
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12-31-2010, 03:40 PM | #197 | |||
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Quote:
Allen, I am only taking mestinon for MG and I have this exact change in me. I used to love exciting and scary movies and rarely cried. Now I can't stand the sight of blood or violence, it makes me stressed, and I cry when I see, hear or read something emotional. Sometimes I even cry when I read the experiences of others with MG symptoms. I don't know what to think of it. I feel like an emotional wreck. All this started with MG and when I get weak from MG I am more likely to cry. Those sad movies are torture and I can't watch them. I have often wondered about the connection between my loss of emotional control and MG. Annie59, I wonder if there is thyroid or vitamin D conection for me. I'd like to have these checked but don't have enough energy right now for another doctor visit. Does hyperthyroidism include having cold hands and feet? I need to do some research. Thanks for bringing this up.
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01-18-2011, 01:59 PM | #198 | ||
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hey annie, youre onto something.
My physician called me couple days ago with my blood results, everything was acceptable. He called me back today, said my Vit D was low, around 15, should be 30, so he told me to start taking vit D 2000 Units a day. |
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04-24-2011, 12:19 PM | #199 | ||
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Hi, I am new. May need to practice getting around the site. Six months ago I was diagnosed with MG. I receive IVIG and it helped for a while but now seems to be doing nothing. Help! Any ideas?
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04-24-2011, 03:02 PM | #200 | ||
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Quote:
How long ago did you receive the IVIG? Are you on any other drugs? Is your doctor planning any other treatments? Abby |
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